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Barriers to accessing public cancer genomic data

Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to term...

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Autores principales: Learned, Katrina, Durbin, Ann, Currie, Robert, Kephart, Ellen Towle, Beale, Holly C., Sanders, Lauren M., Pfeil, Jacob, Goldstein, Theodore C., Salama, Sofie R., Haussler, David, Vaske, Olena Morozova, Bjork, Isabel M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Nature Publishing Group UK 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6586850/
https://www.ncbi.nlm.nih.gov/pubmed/31222016
http://dx.doi.org/10.1038/s41597-019-0096-4
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author Learned, Katrina
Durbin, Ann
Currie, Robert
Kephart, Ellen Towle
Beale, Holly C.
Sanders, Lauren M.
Pfeil, Jacob
Goldstein, Theodore C.
Salama, Sofie R.
Haussler, David
Vaske, Olena Morozova
Bjork, Isabel M.
author_facet Learned, Katrina
Durbin, Ann
Currie, Robert
Kephart, Ellen Towle
Beale, Holly C.
Sanders, Lauren M.
Pfeil, Jacob
Goldstein, Theodore C.
Salama, Sofie R.
Haussler, David
Vaske, Olena Morozova
Bjork, Isabel M.
author_sort Learned, Katrina
collection PubMed
description Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to terms restricting use and sharing, downloading, and assessing quality, is it possible to know whether or not a dataset can be used. In this paper, we evaluate the barriers to data sharing based on the Treehouse experience and offer recommendations for use agreement standards, data characterization and metadata standardization to enhance data sharing and outcomes for all pediatric cancer patients.
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spelling pubmed-65868502019-06-24 Barriers to accessing public cancer genomic data Learned, Katrina Durbin, Ann Currie, Robert Kephart, Ellen Towle Beale, Holly C. Sanders, Lauren M. Pfeil, Jacob Goldstein, Theodore C. Salama, Sofie R. Haussler, David Vaske, Olena Morozova Bjork, Isabel M. Sci Data Comment Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to terms restricting use and sharing, downloading, and assessing quality, is it possible to know whether or not a dataset can be used. In this paper, we evaluate the barriers to data sharing based on the Treehouse experience and offer recommendations for use agreement standards, data characterization and metadata standardization to enhance data sharing and outcomes for all pediatric cancer patients. Nature Publishing Group UK 2019-06-20 /pmc/articles/PMC6586850/ /pubmed/31222016 http://dx.doi.org/10.1038/s41597-019-0096-4 Text en © The Author(s) 2019 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/.
spellingShingle Comment
Learned, Katrina
Durbin, Ann
Currie, Robert
Kephart, Ellen Towle
Beale, Holly C.
Sanders, Lauren M.
Pfeil, Jacob
Goldstein, Theodore C.
Salama, Sofie R.
Haussler, David
Vaske, Olena Morozova
Bjork, Isabel M.
Barriers to accessing public cancer genomic data
title Barriers to accessing public cancer genomic data
title_full Barriers to accessing public cancer genomic data
title_fullStr Barriers to accessing public cancer genomic data
title_full_unstemmed Barriers to accessing public cancer genomic data
title_short Barriers to accessing public cancer genomic data
title_sort barriers to accessing public cancer genomic data
topic Comment
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6586850/
https://www.ncbi.nlm.nih.gov/pubmed/31222016
http://dx.doi.org/10.1038/s41597-019-0096-4
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